The Elephant in the Room

Last week, I attended an Alzheimer’s Association conference. The keynote speaker was Peter V. Rabins, MD from Johns Hopkins and the breakout sessions were facilitated by professionals from across the region. Although I studied Alzheimer’s in my gerontology courses, I was curious to learn about the latest in medical research and social support.

There was lots of information about hopeful treatments and caretaking issues, but two things really stuck with me. One reminds me of how elephants are said to have very long memories. When most people hear about Alzheimer’s, they think about gradual memory loss. But Alzheimer’s patients can experience a wide range of behavioral and psychological symptoms, including wandering, hoarding, paranoia, and aggression.

The loss of memory can lead to unhelpful behavior from those around the patient. One speaker explained how it is neither useful nor kind to keep correcting someone with Alzheimer’s if they say it’s Monday when it’s actually Friday. Or they call a person by the wrong name. Whatever the mistake, rather than bring attention to it, it’s more important to stay in the moment with that person. Being present is what matters. Memory loss can be terrifying enough without constant corrections that only add distress to the situation.

The other thing that stuck with me relates to the phrase, the elephant in the room. We all know that it refers to a problem no one is willing to acknowledge. A problem that’s too big not to be obvious, yet everyone ignores it. That seems to be the case with Alzheimer’s. I talked with several women at the conference who had a common experience when a family member developed Alzheimer’s. Someone, often the spouse, tried to keep that person hidden from the world. Away from the rest of the family. It was as if they were trying to keep other people from finding out what was going on.

Why the secrecy? Was it embarrassment? Shame? No matter what the intention, the silence only makes it harder—for both the person with the disease and the person keeping it secret. Trapped by stigma and fear, everyone suffers. As I listened to the stories of those women, painful memories came up about how the same thing happened to my father.

Another presenter said that we need to learn as much as we can about dementia in general and Alzheimer’s disease in particular. Avoiding the topic won’t improve our chances of avoiding the condition. Instead, the more we arm ourselves with information, the more we can find ways to avoid, delay, or at least be better prepared.

It’s time to talk about the elephant in the room. It’s time to stop hiding the Alzheimer’s in our families. It’s time to stop keeping ourselves in the dark. There’s information on the Alzheimer’s Association website. There are books like The 36-Hour Day by Mace and Rabins. Knowledge is power. Go get yours.